Wednesday, November 24, 2010

I am thankful for a messed up at our school district because without that we would not be at the school we are currently at.

I am thankful for a family and husband who is understanding and willing to give up their day to day contact with Daniel to allow him to move to Grand Rapids with me and get this awesome schooling.

Check out this video from a year or so ago about the school we are at....watch the determination. If that is all we get from Daniel is the determination to do more, than that will be wonderful, but so far we are seeing so much more!

Tuesday, November 2, 2010

Did you know - The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.

In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures

The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal

It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents

Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.

What is a Seizure? In normal brain function, millions of tiny electrical charges pass from nerve cells in the brain to the rest of the body. A seizure occurs when the normal pattern is interrupted by sudden and unusually intense bursts of electrical energy which may cause strange sensations, emotions, behaviors or convulsions, muscle spasms, and loss of consciousness. These unusual bursts are called seizures

Monday, November 1, 2010

Things are going great over on this side of the state. We are just still trying to adjust to many changes. There are so many little things that I didn't even think of before Daniel and I moved.

Like - uuum its being a single parent 95% of the time. There are no daily breaks anymore when Daddy gets home because Daddy is 150 miles away. So that is the #1 big time adjustment. Daniel still talks with Daddy on the phone a couple times a day, and of course he sees him on weekends.

Needless to say that with the move our routine has changed drastically. We currently don't have outside therapies anymore. Well that's because he is getting his OT and PT right in school the WHOLE time. He is also getting speech but on a different level. So far we aren't working at school much with the augmentative device. That is the only thing that is lacking so far, but we are working on it at home. I do wish that was incorporated into the day at CLC more. They do work on speech a lot, but just not with the device. Daniel is learning to vocalize a lot more, and responding quicker.

Here is a very poor video (visually) as it is way out of focus, but if you just listen to it, you can hear him telling me the answers and then selecting it on his device. Sometimes his hand hits the wrong answer but you can hear that he continues on until he gets the right answer. He even sometimes hits the correct answer a few times, just to make sure I understand that is his FINAL ANSWER! For those of you who are familiar with AAC devices, there is no delay in the selection at the time of the video, otherwise you wouldn't be hearing his hand hitting the wrong button.

So is it me or do you guys hear him saying the words too? No they are by far not "perfectly" pronounced, but he is for sure attempting. And that is all that I ask for, that he has not given up, that he is still trying. He is speaking perfectly to my ears!

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